What’s the problem?
Parents with children like Rash have a terrible time. Most days are a series of struggles with their child, trying to get them to do ordinary things such as brushing their teeth, tying their shoelaces and going to school. Exasperating emotional scenes, even complete ‘meltdowns’, are frequent at home and in public. Siblings may suffer through being involved yet having their own needs neglected. Parents sometimes report that they constantly have to ‘walk on eggshells’. One mother says, “You have to be on the top of your game the whole time.” It’s exhausting.
It’s also lonely and embarrassing. Children like Rash are not common, so parents may not know anyone having remotely similar problems. Making it still more uncomfortable, other adults – amateur and professional – freely offer advice, usually of the ‘common sense’ variety: be firmer, be more consistent with rewards and punishments, etc. Rash’s Mum and Dad know from bitter experience that ‘commonsense’ approaches to childcare haven’t worked with him. As a result, they feel they are bad parents.
Teachers and other professionals may also feel defeated by the likes of Rash. As noted, such children are quite rare, so an individual class teacher or therapist may never have met one before. Even caring teachers and schools may decide they have no option but to exclude such children, a decision likely to leave them feeling uncomfortable and inadequate. We know of an experienced and skilled psychologist who had a ‘career first’ when Rash bit her. All credit to her, she hasn’t given up on him and is now making great efforts to learn about PDA and extend her range of treatment strategies.
In essence, ‘the problem’ is that:
- not many people know about PDA;
- being responsible for a PDA child is lonely, distressing, exhausting and embarrassing;
- effective strategies are hard to come by;
- anyone closely involved – adult or child – is likely to feel helpless and lack hope.
So what do we do?
PDA Matters is a contribution to solving ‘the problem’ outlined above. It is incorporated in the State of Connecticut as a not-for-profit organization and recognized by the Internal Revenue Service as a tax-exempt public charity under Section 501(c)(3) of the Internal Revenue Code. Our main function is Raising Awareness and Spreading Hope (RASH) about PDA in the US. We are starting in a small way, aiming to expand as resources permit.
We use the power of the web to:
- provide information to raise awareness about pathological demand avoidance;
- foster international links between the US and other countries on PDA matters;
- facilitate communication between parents and carers of children seriously believed to have PDA;
- offer a discussion forum for teachers and other professionals interested in better handling of PDA children;
- (where possible) spread hope about the future for PDA children.
In addition, PDA Matters:
- promotes research into PDA;
- works towards having PDA recognized in the Diagnostic and Statistical Manual of Mental Disorders (DSM).
Obviously, what we achieve depends partly on funding. All donations appreciated! Donations are deductible on US Federal income tax returns. We can also receive tax-deductible bequests, devises, transfers or gifts.
In addition, we welcome offers of help, especially from people with family or professional experience of PDA. Please contact us if you have something to offer.